I have my much anticipated appt. with the Rheumy this Friday, you know the one I've been waiting on since last SEPTEMBER??!!!! The darn people have called 3 times in the last two weeks just to confirm my appt. I keep asking them if they really think I'm gonna miss it after waiting this long. I mean HELLOOOO!!!
So if you were going to a dr for the first time, what would you ask about? I am mainly hoping for the "final" diagnosis. My primary is 99.9% positive it's lupus but can't do anything without the rheumy's diagnosis as far as treating me, the only thing I have as far as meds go is my big bottle of Vicodin and a presc. for my rash. That's another thing I will be asking about the rash. No matter how many times we use the cream on my back the rash keeps coming back, in a different spot than what was treated. It itches like crazy, on top of my "normal" itching and is driving me insane.
So I know to ask about the rash on my face, the fevers, the pain, the rash on my back, the fatigue that I am currently in the grips of (GRRRRR), the itching, sun exposure issues as well as heat, hair loss, bruising. Am I forgetting anything?
I hope you are all having a great week!! {{HUG}}

hatlady

06-29-2005, 04:17 PM

Hi TracyDawn;

So glad you'll get your appointment FINALLY!

What I usually do is write a list - and make two copies. I give one to the doc, and keep one. That way I can be sure that all my quuestions get answered - AND I can evaluate the rheumy as well. I expect him/her to pay attention, to answer my questions and treat even the minor ones as important - because they are to me.

well I still don't know BUT the dr is looking into things. I had labs done on Friday after being poked and prodded. He says I definitely have fibromyalgia but he is holding off on the Lupus dx until I see a dermatologist. He wants a biopsy of my face done. Has anyone ever had one of those? How bad does it hurt? I am intentionally not looking it up because I am scared of this one. Nothing much scares me anymore where the medical world is concerned but this does.
After he got through with his poking, I headed back to Tallahassee and started feeling SO bad. It was awful. I got my labs done (he said it would take them longer to get back cause they are a lot more in depth than any I've had before so I wanted to get them working on it) and by the time I got home I was really sick. Can't keep anything in my stomach and the pain both in my joints and my stomach have been excrutiating!! Thankfully my son is out of town with my inlaws cause I have spent the last 4 days in the bed. UGH Today is my first real day up, back at work too, so we'll see how I do. I've lost 4 lbs this weekend cause everything I eat makes me sick. anybody ever get sick like that from an exam? I was ok, not great, but ok before he poked and prodded. I think he touched something that set me off, it's just weird how hard and fast it came on when he got done. Anyway, that was my appt (and after effects LOL). I go back in 4-6 weeks to get the results from all the tests.
Thanks for asking about me. {{HUG}}

hatlady

07-05-2005, 06:23 AM

Many hugs, dear.

When I went to a dermatologist for a rash on my face, I'd thought she was going to biopsy as well. But she just did a good look - with a VERY bright light and poked and prodded (lightly) a bit. She decided it was rosacea. So I can't help you on how a biopsy might feel. I suspect that with the face, they may not do anything that would leave a permanent mark, so that means it would be something small, or even a scraping. Do let us know!

It is such a good feeling to know you're on the track to get some answers.

Stay well out of the sun, if it is in the sky (from sun up to sun down) wear sunscreen AND long sleeves AND slacks AND a hat with a large brim AND sunglasses if it is at all bright. Clouds don't take away the UV, so cover even when it is cloudy.

Stay in touch --

TracyDawn

07-05-2005, 06:38 AM

Thanks hatlady. Yeah I know the sun is a pain (um literally LOL) and being in FL it is always there, it's weird but the sun usually shines even when it's raining. I have lots of sunscreen, long sleeves, all kind of stuff. Actually just got a new hat on sale at Beall's Outlet on Saturday that has a wider brim than the one I've been using. No matter what I do tho I still look like I have the hives when the sun reaches any part of me. Very strange!!
So with rosacea is it affected by being exposed to the sun? I get a rash EVERY time sunscreen or not, when exposed.
Thanks for the thoughts.

hatlady

07-05-2005, 07:41 AM

Rosacea has a lot of triggers - they vary by person. Many are triggered by red wine or other alcohol, some can't do spicy foods. My biggest trigger is the sun, with heat a close second. Red wine does make me glow a bit, but not too bad. (I stick to one SMALL glass when I have any!)

visit rosacea.org at some point if that's what you find out your rash is, they have a TON of information and some good diaries to help you find out what your triggers are.

TracyDawn

07-05-2005, 09:51 AM

Thanks. BTW do you only get the rash on your face or do you get it everywhere? I still have that stuff on my back that no one seems to be able to identify. Hmmm guess I could check out that site you mentioned and see if it says anything there LOL

hatlady

07-06-2005, 01:41 AM

I've only had the rash on my face, and occasional "dry spots" else where that respond to a good aloe based cream, non Rx.

I know many others tho who have ongoing rash issues, so you're not alone there!